Brain Injury Association of Massachusetts Blog

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Today’s post comes from Stephanie Deeley, the sister of Kim Boleza, who lived with a traumatic brain injury and ultimately died from it. Her story will be told in two parts. Look for the second part in an upcoming post.

I recently sat down with Emmy in BIA-MA’s Marketing and Communications department to talk about my sister Kim, who had a traumatic brain injury as a result of domestic violence. To describe Kim, you would need a dictionary full of words! Smart, funny, gutsy, loyal, determined, dedicated, kind and loving all come to mind. If you know what’s good for you, never get in Kim’s way when she is determined to accomplish something. Kim set high expectations and goals for herself and she was always successful in achieving those goals.

Kim went to college and grad school, but not on the schedule that most people do. She actually flunked out during her first semester at UMass Amherst. I am convinced more because she simply did not want to be there than because of anything else. If you are not in school, then you have to work, and Kim had a few interesting jobs before settling in as a client service representative for an organization that cared for adults with severe autism. Kim was great at her job, and loved by her co-workers and her clients. But, her clients were a challenge, and one day Kim was hurt at work. My brother Ed and I both received calls that she was on the way to the hospital in an ambulance, and off we went dreading what we would find when we arrived. I remember thinking how grateful I was that it was “only” a concussion.

Kim finally figured out after a few years what she wanted to do, and she went back for her Bachelor’s degree, and after a few years working, she went back again to grad school where she excelled. She graduated in May of 1999 and started interviewing for her first “real” job. In September of that year she went to work for Children’s Hospital, and began a career that took her to three of the best known hospitals in the world, and earned her a reputation as one of the best in her field. While at Children’s Hospital, she was driving home one night when a deer ran out of the woods in front of her. An avid animal lover, she of course swerved to avoid hitting the deer, which resulted in her car being totaled and another concussion. And again I remember thinking, “Thank God it is only a concussion!”

Kim Boleza

Kim never wanted to get married but had some great boyfriends over the years, so when she introduced us to a new man in her life in 2002, we didn’t think too much of it. I do remember driving to a skating contest to see our niece after one of her first dates with this man, and she told me she felt like he was stalking her simply because he called to make sure she made it home safely. He was 12 years older than her, my age, and I laughed and told her it was an age thing, but I do remember thinking there was something different about the way she spoke about this new man. In the summer of 2004, he proposed to her on the jumbo-tron screen at a Red Sox game. I remember being a bit concerned at the time, thinking he did that knowing she would not embarrass him by saying no in front of all those people. I should have listened to my gut.

Kim married in September of 2005. It was not too long after that when she first said she did not think she was cut out for marriage. I told her she had been single for a long time, and adjusting would take some time. I never thought to ask if she was safe, or if she was afraid of her husband. I should have.

Eventually our suspicions that there was domestic abuse were no longer suspicions. Kim’s husband had started drinking, he was not coming to family events, and Kim was showing signs of withdrawal from her family and friends, a classic symptom of abuse. One February day Kim informed us that she had fallen on the ice in her driveway and hit her head pretty hard. I don’t think any of us bought her story, but we all respected her right to her privacy, and thanked God it was “just a concussion.”

Kim was soon experiencing severe issues with headaches, difficulty remembering appointments and schedules, and a variety of issues that seemed to point to something more serious. Shortly thereafter she had her first seizure, or at least the first that she told us about. We also began to notice that she would send emails that were just gibberish, more than just spelling errors. Kim was still working and we expressed to her our concerns. By this time, Kim had been diagnosed with a brain injury, but she did not want to tell her employer that. She was having difficulty doing the paperwork for her job and missing time from work because of the serious headaches and time in the ER. But, Kim would not tell her employer that she had a brain injury. She eventually lost her job, and even then, Kim preferred to have them think she was incompetent rather than that she was a person with a brain injury.

Kim’s seizures were difficult to control and it was a constant effort to try and find a combination and dosage of medicines to control the seizures. Kim never knew when a seizure was coming; she had no aura prior to the event. After several car accidents, it was determined that Kim was having mini-seizures, and she stopped driving. She was experiencing debilitating headaches that brought her to the emergency room on a regular basis. Kim had cognitive testing done and she finished in the bottom 10% on executive functioning skills. This was an area Kim had excelled at all her life–the ability to prioritize, organize and analyze. It was a difficult day for Kim. She was hospitalized on several occasions to try and get a better understanding and control of her symptoms. Kim recognized that she had limits, but she always tried to push the envelope and find alternatives. It is worth noting that at all the appointments Kim had, never did one medical professional suggest the Brain Injury Association as a resource to Kim. Ed saw a billboard on the highway driving Kim home from one of these many appointments and suggested Kim should contact them. She never did…

“Do what you can, with what you have, where you are.” – Theodore Roosevelt

This quote is one that is perfect for caregivers. Caregivers are special people. Not just anyone can be a caregiver. Being a caregiver requires patience, responsibility, organization and a true sense of selflessness. Often people become caregivers after a loved one falls ill or has an accident. Caregivers of brain injury survivors are often parents, spouses, sisters, brothers or friends – loved ones who never imagined they’d need to balance being a loved one with being a caregiver.

Despite all that caregivers do – taking their loved ones to doctors appointments, rehabilitation, doling out medicine, serving as moral support and the number one cheerleader – they can often feel inadequate or as though they can never do enough. When you’re experiencing one of those moments in the day when you feel stressed, overwhelmed or helpless, use these tips to get yourself back on track and find inner peace.

1. Accept that what you are doing is enough. Caregivers of brain injury survivors often feel helpless. They strive to help their loved ones make progress, do endless research on the latest treatments and rehabilitation and advocate tirelessly for the best medical care and services out there. However, it never seems like enough. Instead of beating yourself up for not having enough time for a, b or c, feel proud that you provide continual support for the survivor in your life. The work you do is admirable and although there are never enough hours in the day, always remember there is always tomorrow and that is OK.

2. Find a support system. Many caregivers feel as though they’re completely alone. Whether you are a mother or father of a survivor, spouse or friend, it is important to find someone you can rely on if you need to. What happens if you get the flu or simply need a day off? Find someone you can trust and have he or she fill in. Rely on family members and friends. Chances are good that they’d be happy to help, you just need to ask! Caregivers need support just as much as survivors do.

3. Leave time for yourself. Take a vacation. No, really! Take a day off! Get a massage, practice yoga or join a book club. It is important for you to take care of you and by having a support system in place, you’ll be able to do those necessary things like taking a day off, running an errand on your own or taking a vacation. Some caregivers take a vacation or weekend off a couple times each year so they can relax and recharge their batteries. It is incredibly important for you to take care of yourself so you can be the best caregiver you can be and that starts with your physical and mental health.

4. Talk to someone. Find a support group – online or in-person – and talk to others who understand what you’re going through. Caregivers need to find support just as much as survivors do. Brain injury is life-changing not only for the survivor, but for loved ones and caregivers as well. Some caregivers experience PTSD, anxiety or depression, so it’s important to talk to someone you trust and recognize the signs if something isn’t right, so you can get the help you need.

Looking for information and resources for brain injury survivors and caregivers? Call the Brain Injury Association of Massachusetts at 1-800-242-0030.

Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how their family life has changed since Isabella’s brain injury. Read Isabella’s entire story on our website.

When Isabella suffered a brain injury, every aspect of our family life suddenly changed. While life is not perfect or the way I had planned, it still is great. Often, people do not understand why things are different because on the outside Isabella looks “fine.” Isabella’s ABI (acquired brain injury) is an invisible disability. Below are some of the ways that our family life has changed.

1. Our day-to-day life is different: As summer approaches, I think of how we spent our days prior to Isabella’s ABI. We were either at the beach, swimming in the pool, going to cookouts and parties, taking day trips, going to the zoo or hiking. Prior to Isabella’s ABI, she was a lot more independent. Since her ABI, our summer days are spent at speech therapy, occupational therapy, physical therapy, aquatics therapy, in-home behavioral therapy, hyperbaric oxygen treatment, infusions, meetings and doctors appointments. Isabella also requires help with daily tasks, such as getting dressed, brushing teeth, using the bathroom, etc. Our downtime has to be carefully planned out and revolves around Isabella and where she is mentally at any given moment. I have to consider her level of anxiety, aggression, mood, fatigue, etc when trying to plan an outing or activity.

2. Others perceive us differently: Isabella looks like a typical seven-year-old child. She has an ABI, which is an invisible disability. Isabella is a completely different child than she was before her brain injury. She struggles on every level behaviorally, emotionally, psychiatrically, cognitively, verbally, etc. While others may be in denial that anything is wrong, I have come to terms with the fact that Isabella will never be who she once was. Accepting this early on has helped me tremendously. While Isabella was robbed of the life she was supposed to have, she is working really hard. Her future will be different, but she has a future I believe will still be bright – it just won’t be how I may have imagined it.

Kristin and her daughter Isabella participate in BIA-MA’s #BrainInjuryAffects Campaign.

3. Isabella’s behavior can be unpredictable: Isabella gets out of control. She can drop to the ground, kick, scream, hit and have a full out tantrum. Other times Isabella says and does the most inappropriate things. Isabella’s brain injury causes her do things that she can’t control. Having someone laugh, point, yell at either of us or add rude commentary does not help the situation. Isabella doesn’t need to be physically disciplined or ridiculed. She needs support, understanding and positive reinforcement. As a Mommy, I am doing everything that I can to help her and when we are judged, it makes us feel worse.

4. Isolation occurs: As we continue on this journey, I have realized that everyone else’s lives are moving on and in many ways ours are not. Most of our family and friends have stopped inviting us to parties or events. At first I was relieved because I didn’t have to explain why we couldn’t be there. It hurts when the invitations stop because it feels like family and friends have forgotten about us. It’s hard to hear about graduations, birthday parties, holidays and other get-togethers. While Isabella may not ready for those types of situations, there will be a day when she will. I am so thankful for those few people in our life that continue to invite us in hopes that one day soon things will change.

At the end of the day, do I wish things could be different for Isabella and our family? Yes, of course I do. I wish nobody had to suffer from a brain injury. That being said, the reality is a brain injury is not going to magically disappear. I am helping us embrace the life we now have and to make the best of what we have – it’s all in how you look at it. I am thankful for every moment and day I have with Isabella. The outcome could have been so much worse. Brain injury changes every aspect of your family. It doesn’t mean your life is over, it means that you need to accept that a new life is about to begin.

Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the challenges of parenting a child with a brain injury. Read Isabella’s entire story on our website.

Parenting a child with a brain injury is completely different than parenting a child without a brain injury. Isabella is totally different since she suffered an acquired brain injury (ABI). Her brain has changed, so I had to change my parenting as well. Prior to Isabella’s ABI, she was your typical four-and-a-half year old child. I do not remember her ever being angry – she was a very happy child who had an infectious laugh.

Since Isabella’s ABI, I have found that in-home behavioral (ABA – Applied Behavior Analysis) is making an enormous difference in our lives. We have had a behavioral team for over one-and-a-half years. I have been receiving ongoing parent training during that time.

Parent training has included identifying triggers, positive reinforcements, de-escalation strategies, effective instruction delivery, coping strategies, implementing rules and many other behavioral aspects. We have a behaviorist who works with me on training and program development. The behaviorist writes the programs that are taught to Isabella. The behavior monitor works directly with Isabella on the programming. Some of the programs we are working on are coping skills, identifying emotions and how she feels, average daily living skills, social skills and alternatives to destructive behavior. As Isabella masters a skill, another one is added. Progress is slow but it works. It requires consistency, patience, predictability, follow through and commitment. This is our life and I am willing to do whatever is necessary to help my daughter. These are some of the things that I have learned:

Focus on safety at home. Our home is adapted to meet Isabella’s needs. This means placing any unnecessary items away to make it less stimulating and less overwhelming. Each room is childproof. For us this meant magnetic locks on the cabinets, sharp objects placed up high, glass items removed, outlets covered, additional locks on doors, closets locked, gates up, etc. Isabella’s bedroom is a “safe” room where I can place her for time out. It has a custom half door, furniture bolted to the wall, mattress on the floor and windows covered. When Isabella is raging, this is where she goes so I can safely maintain her.

Pick and choose your battles. Allow choices whenever possible. Medication, bedtime, therapy and showering are all not negotiable. However, choices for meal and clothing are always presented. Relinquish control where appropriate and it can make a big difference.

Schedules and routines are so important. This helps with transitions and allows for predictability. Mealtimes, showering, medication and bedtimes are all followed strictly.

Find a support network. Family and friends are the natural supports. I have found having brain injury survivors, parents of children with brain injuries and parents of those with special needs to be the most accepting and understanding. Those are the people who can most relate to my everyday life.

There is help out there, but you have to ask for it. I was ashamed, embarrassed, sad, scared and a ton of other emotions with how bad things had gotten. Isabella would rage for hours. For example, she’d throw chairs, bite, kick, hit, spit, go to the bathroom where she shouldn’t, flip furniture, destroy property, etc. Asking for help didn’t make me a bad parent. It made me a better parent and allowed me to give my daughter what she needed to be successful.

Right now, Isabella is going through a very challenging time for various reasons. What helps is having a home that is adapted to meet her needs, behavioral strategies in place, a support network and behavior team that is committed to Isabella. Parenting Isabella produces a lot of emotions for me. There are days where my heart breaks for her. I see her trying so hard to not be impulsive, to use her words, be safe and she just isn’t able to. Seeing her try so hard and not be successful is so sad. There are days where the aggression is nonstop. On those days I remind myself that this isn’t her fault or mine. This is her brain. On those days, I take a minute to just take deep breaths. There are some days when I see Isabella successfully using the skills she has been taught and those are the most rewarding times.

No matter how good or bad the day, when Isabella was in the hospital dying before my eyes, I prayed to God (or whoever was listening) to save my baby at all costs. No matter what the consequences were of that decision. Isabella was saved. I stand by that every moment of every day.

What part of parenting a child with a brain injury is the hardest for you?

If you’re looking for a great way to spend an afternoon this month, check out the The Brain Injury Association of Massachusetts’ (BIA-MA) Southern Regional Office’s Touring Art Exhibit at Lakeville Public Library from April 1-29 with an artists’ reception on Tuesday, April 16 from 5:30 – 7:30 p.m.

Some of the artwork displayed.

This unique exhibit features artwork and jewelry created by members of 12 BIA-MA support groups located throughout Southeastern Massachusetts. The exhibit is a result of a grant from the Wareham Cultural Council to support “Soaring Without Limits Through the Arts.” The Council is supported by the Massachusetts Cultural Council, a state agency.

“Art, music, and writing are all therapeutic to the healing process,” says Sandy Topalian, Ph.D., CBIST, manager of the BIA-MA’s Southeastern Regional Office in East Wareham. “We hope this exhibit will showcase the talents and capabilities of survivors of brain injury and increase awareness of brain injury that affects thousands of individuals in southeastern Massachusetts, Cape Cod, and the Islands.”

Local artists have been working with survivors of brain injury as they prepare pieces for the exhibits.

BIA-MA has support groups in more than a dozen communities in southeastern Massachusetts, including Fall River, Plymouth, New Bedford, Wareham, Falmouth, Hyannis, Buzzards Bay, and more. These groups provide social, recreational and educational opportunities to survivors of brain injury and their families.

Necklaces, earrings and bracelets were some of the jewelry featured as part of the exhibit.

For more information on the exhibit or to purchase a piece of artwork or jewelry, please contact BIA-MA’s Southeastern Regional Office at 888-607-7678 or e-mail biamase@biama.org.

Have you been to the Touring Art Exhibit yet? What did you think? What was your favorite piece?

Although the official Brain Injury Awareness Month is over, our advocacy and awareness efforts are not. Our social media and advocacy #BrainInjuryAffects campaign has been so successful that we have decided to continue it. Through the campaign, we have spoken to and met so many incredible survivors, family members, caregivers and brain injury professionals and have been able to share their stories on Facebook,Twitter, this blog and our website. We hope you’ll continue to share your stories with us! Today, we’re sharing brain injury survivor Scott Doane’s story.

It was 1967 and Scott Doane was just seven years old, riding with his father and sister in their station wagon when their vehicle got broadsided by an 18-wheeler whose brakes gave out.

“My sister saw the whole thing,” Scott explains. A bystander, who turned out to be a marine and EMT, ran over to help. Scott’s sister was screaming “Where’s Scott?” which made those helping at the accident scene look for him. They saw tufts of Scott’s hair behind the front seat where he was pinned.

“The marine saw that I was unresponsive and choking on my tongue. He began to give me mouth to mouth and saved my life,” he says.

Scott, his sister and father were taken to the local hospital. His sister received 20 stitches and his father had a collapsed lung and broken ribs. Scott needed more care so he was taken to Columbus Children’s Hospital in Ohio where doctors discovered he had a significant frontal lobe brain injury and his right side was paralyzed. To keep the brain swelling down, doctors gave him penicillin and put icepacks all around him. Scott was in a coma for three weeks and was not expected to survive. Despite the doctors’ beliefs, he did.

After three months, he was finally released from the hospital. He was paralyzed on his right side and spent six months in a wheelchair. Scott was given no formal rehabilitation for his brain injury other than regular checkups and working with his parents at home. Their family moved out of Ohio and after that, there was no follow up on his brain injury, leaving Scott with many questions.

Just three years ago, Scott found himself still desperate for answers about the accident and his brain injury, so he asked his father to give him his medical records so he could find out more. He went to get a baseline MRI, started seeing doctors and getting tests done to find out more about the extent of his injury.

Today’s blog is written by Sandra Madden, brain injury survivor and administrative assistant at the Brain Injury Association of Massachusetts.

When I was diagnosed with Post-Concussive Syndrome, I did not understand what a traumatic brain injury was, let alone understand what a support group was. Then, it was suggested that I attend a support group meeting with a group called BABIS (Boston Acquired Brain Injury Support Group) – I wish to this day I could remember who suggested this to me, as I would bestow a very big hug upon this wonderful person. At BABIS, I felt understood, in ways my family and friends could never understand, and I felt a sense of appreciation for all that I still had, despite my brain injury.

I have found many benefits in joining a support group – there is a sense of belonging when a sense of isolation can be so dominant, long-lasting friendships are formed, and coping skills and other valuable lessons are learned. Even on the simplest level, being surrounded by others like you provides a sense of calm and belonging.

The Brain Injury Association of Massachusetts (BIA-MA) has over 33 support groups in the state of Massachusetts and these support groups serve survivors, family members and caregivers of all ages. The purpose of BIA-MA’s support groups is to provide support, information and social recreation opportunities. However, according to Barbara Webster, the Support Group Leader Liaison for BIA-MA, “The most important function a support group provides, the most important value, is finding out you are not alone.”

These support groups are both large and small, and the size of the group can drive the focus. Small to medium groups can address individual needs and issues while larger groups host speakers such as doctors and authors. “There are so many needs in the groups, trying to adjust and adapt, be understanding and be patient, yet meet everyone’s needs” is the focus of all support groups, says Barbara.

If you are newly diagnosed or have been living with a brain injury for some time, and you have yet to seek out a support group, I would urge you to consider contacting the Brain Injury Association of Massachusetts for a listing of the support groups in our state. I believe you will experience a sense of belonging and understanding, and if you are fortunate, you may make some friends along the way.

For a listing of all support groups sponsored by the Brain Injury Association of Massachusetts, call the Information and Resources Department at (508) 475-0032 or visit our website.